I was recently told I had hydroSM and my syrinx is from T1 to T12/L1. However when I was reading the mri I noticed it referred to an mri I had in 2010 where I also had hydroSM, but my dr. never told me back then. Has anyone else had their syrinx grow this much this quickly? And if so, how quickly did your symptoms progress and did you become paralyzed? Did you have surgery? I can't fknd a neuro or pain mgt dr who knows anything about SM so I don't know. I just feel like this is an abnormally fast speed for a syrinx to grow but I'm not sure and wanted everyone's opinion/experience. Thanks.

You don't say how long the syrinx was in 2010. Everyone is different. Most progress very slowly and have long periods of stability. Also a syrinx can be very long and not cause symptoms if it does not press on the nerves. Not saying you cannot have symptoms, just doubt the syrinx is probably not the culprit. If you are having an increase in symptoms, you definitely need to see someone who can find out what is going on! Syringomyelia specialist are few and far between so you may have to find a doctor who specializes in spinal cord injury unless you can travel and your insurance company is not a pain.

Oh I am so sorry, in 2010 my syrinx was from T2 to T4. I have been in pain since I was in kindergarten/first grade and often couldn't participate in activities such as phys ed. I also had an MRI in 1999 when I was 13 because of severe back pain but the doctor no longer has that MRI. I am in constant pain, often cannot get out of bed/rise from a chair, shooting pains down back/arms/legs, throbbing or burning pain in various parts of body almost all the time, constant shoulder/neck pain, migraines, tingling/numbness in extremeties, vertigo, I used to faint as a child often. I don't have any part of the day or night that I am not in pain however I can't find a doctor that will prescribe me anything because all of the doctors I have seen don't believe that SM causes pain.